Like many other women around the world, my journey with endometriosis has been a long, frustrating and exhausting tale that has marked much of my life. Here is my story...
For those who haven't heard of endometriosis (pronounced end-oh-meet-tri-oh-sis), its a painful and often debilitating disease in which the tissue that is similar to the lining of the womb grows outside it, in other parts of the body.
There are two main problems that can occur when the disease is present, and these include pain and infertility.
Endometriosis Symptoms
Fatigue.
Pain that stops you on or around your period.
Pain on or around ovulation.
Pain during or after sex.
Pain with bowel movements.
Pain when you urinate.
Pain in your pelvic region, lower back or legs.
Having trouble holding on when you have a full bladder or having to go frequently.
Heavy bleeding or irregular bleeding.
Endometriosis Facts
There is no prevention.
There is no cure.
Pregnancy or a hysterectomy will not cure it.
It's not an STI, you cannot 'catch' endometriosis.
Teenage girls are not too young to have it.
There are four stages of endometriosis (I- Minimal, II- Mild, III- Moderate and IV- Severe)
I had my first menstrual cycle when I was 12 years old, and unfortunately due to many reasons, I wasn't diagnosed with stage III endometriosis until March 2017, when I was 24 years old. During those 12 years before my diagnosis, I suffered with painful and heavy periods, constant lower back pain and a range of other issues that I noted above.
Throughout my journey, some doctors had told me:
To go on a contraceptive pill to mask my symptoms.
To have a hormonal IUD inserted to mask my symptoms.
That I probably have an STI, even though all tests came back negative.
That I probably have a burst appendix, even though the test came back negative.
One doctor asked me to spell endometriosis for their Google search because they had never heard of it.
That all girls get period pain from time to time, and it's normal.
Well, this post is to remind women that period pain or heavy periods are NOT normal, and if suspect you have this disease, or you suspect your teenage daughter might have this disease, please do not delay booking yourself (or her) in to a quality endometriosis specialist as soon as possible.
Unfortunately, I have found there are many GP's out there who do not know of, or understand this complex condition and I recommend only seeking their assistance for a referral form to see an endometriosis specialist.
In 2017, after spending many long nights waiting for strong pain relief for my period in the emergency department of our local hospital, I was finally referred to a female doctor who I won't forget, Dr Julie Buchanan, who was the first medical professional to ever tell me she suspected endometriosis. And she didn't need Google to tell her what that is! She promptly booked me in for my first laparoscopy surgery, where endometriosis was finally discovered and diagnosed, and I was able to get a clearer picture on how I can manage this disease.
It was now 2018, and I suspected my endometriosis was back with a vengeance due to the fact a) my periods were back to being painful, heavy and unmanageable and b) we were trying to fall pregnant and nothing was happening.
It became apparent that one round of surgery back in 2017 was not enough to clear out the endometriosis in my case, so I sought the advice of endometriosis specialists Dr Susan Evans (author of an amazing and easy-to-understand endometriosis book- Buy the E-Book Here) and Dr Michael Wynn-Williams (co-founder of one of Brisbane's best fertility and gynaecological clinics Eve Health).
After speaking with both Dr Susan Evans and Dr Michael Wynn-Williams, it was clear the disease had returned and I was booked in once again for a laparoscopy. My surgeon, Dr Michael Wynn-Williams, had recommended I try botox in my vagina and pelvic muscles, to help relax them and reduce my pain. I must admit I was rather shocked when he explained this. Botox, 'downstairs' to help my fertility? Well, I'll try anything once!
But nonetheless, I was booked in for surgery where I had almost all of the old, inflamed tissue removed, and botox inserted to help relax the pelvic muscles. Once recovery was over, I felt significantly better after this round, and found the pelvic botox really made a difference! If I needed it, I would definitely get pelvic botox again. My pain levels reduced and I was so happy to finally fall naturally pregnant with my son, Brooks in November of 2018 (he was born July 2019)!
I am so grateful for my son, and I pinch myself everyday that he's in my arms, because I know there are many couples out there who are sadly having fertility issues, and my heart is with them. ♡ I'm also grateful for the doctors at Eve Health who did listen and didn't judge me, who directed me on the best path to manage my pain and fertility.
A multidisciplinary plan is necessary to help manage the many facets of this disease, and this (in my case, anyway) included laparoscopy surgery with an endometriosis incision specialist (not a gynaecologist surgeon), sessions of pelvic floor physiotherapy, sessions with a pain psychologist, sessions of acupuncture and Chinese herbs, light exercise and a healthy diet. One size does not fit all here, so you need to do what's right for you!
I try not to dwell on endometriosis, as I know life is short and I have to make the best of it! I know many other women in my life who also have this condition or a similar gynaecological condition, and I hope we can spread awareness to help find a prevention and cure one day.
You can get involved in fundraising for Endometriosis Australia by clicking here.
In the meantime, for any women out there who are suffering or suspect they are suffering with endometriosis, please know there are many great resources out there that can help you, and I've listed some of these below. Don't suffer in silence!
Great Endometriosis Resources
*Please also know that the above information is my own personal experience, and is in no way medical advice. Please always consult your own medical professional first and foremost.
If you've made it this far, thank you for taking the time to read my endometriosis story. ♡ Please reach out and tag me @thejohannessenfamily or email thejohannessenfam@gmail.com if you have any questions or wish to share yours.